Because the health policy research field is relatively small and research funds are limited, partnerships should be developed among MS societies and other voluntary health research organizations supporting research on diseases that confront patients with similar challenges. Although each of these diseases has some unique features, for the most part, the research techniques, patients' needs, and even the investigators themselves overlap across different diseases, particularly chronic, debilitating diseases. Examples of such diseases include rheumatoid arthritis, diabetes, Parkinson's disease, Alzheimer's disease, and amyotrophic lateral sclerosis (ALS). Much of the research on quality-of-life issues for any of these diseases is likely to be relevant to people with MS. Indeed the development of partnerships among the related health care organizations should benefit a far greater number of patients than each could serve alone. Partnerships could take a variety of forms from collaborative development and funding of requests for proposals (RFPs) to collaborations in convening symposia and workshops.
The committee does not believe that research in health care is optimally served by contracts. However, in recent years, the National MS Society has emphasized the use of contracts for directed research in health care, a strategy it adopted in response to the generally poor quality of the grant applications they had received in past years. While contracts can provide for the collection of useful data, they also bypass the greatest source of creativity—the individual investigator. Committee members noted that otherwise qualified people have chosen not to apply because they find the contracts intellectually confining or conceptually incompatible with their perspectives. Thus, the most innovative researchers might be the least likely to apply, which is troubling since the pool of qualified applicants is already small compared to biomedical researchers. The committee endorses the 2000 decision of the Health Care Delivery and Policy Research Committee of the National MS Society to adopt a more open framework allowing potential applicants more latitude to propose their own ideas. This represents a middle-ground between targeted research and open-ended investigator-initiated proposals.
RECOMMENDATION 18: To protect against investing research resources on false leads, there should be an organizational structure to promote efficient testing of new claims for MS pathogens and disease markers.
Over the years, various viruses, bacteria, and toxins have been proposed as possible causes of MS. None of them have withstood the scrutiny of careful research, although, in a few cases, they have not been ruled out as causes. Although erroneous claims in MS research are relatively rare—there have been fewer than five in the last five years—their effects can be far-reaching. In some cases, erroneous claims have misdirected research, resulting in a substantial but unproductive investment in time and money. These erroneous claims have also